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Why Perspective Matters When Parenting a Child With a Craniofacial Disorder

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Liz's sons on the beach.
Liz’s sons.

We all have our stories and our struggles — some of us as patients, others as parents, some as siblings, and others as supporting family and friends. Especially in the beginning or in the midst of some new test, procedure, visit to a doctor, or surgery, we all feel like our experiences are the most dramatic or the most complicated.

With each new challenge or procedure, we can all experience that drowning feeling. It overwhelms us every time, only to look back after-the-fact and think about how we have overcome that obstacle, and although we know there are more, we can continue to thrive each time.

Everyone views an experience or lifestyle with their own unique perspective, and those new to the experience can feel like they have so far to go. Thankfully, perspective tends to change over time, which in essence, allows us to move along with our medically and socially complicated lives in a smoother fashion.

I remember when our son was born with Treacher Collins syndrome, so many doctors visited us to tell us about all of the things we would be able to “fix” about him as he gets older. “Fixed” was the word they used, as if he were broken. My husband and I clung to each other, nodding our heads, still in shock, and truly believed every word these doctors told us. We were new to this entire world, and we had nothing else to base our opinions on, but the advice of doctors who were out of their realm with this rare infant in their nursery.

We told ourselves, “It would be OK. It can be fixed.” But to tell you the truth, we really only told ourselves that because we were in complete shock and totally clueless. Truly, all of these opinions, all of these thoughts and feelings, really boil down to one subjective word…perspective. At that time, we had none.

“The best view comes from the hardest climb– Unknown” 

Isn’t that the truth? I spent the first two years of our son’s life researching all of the procedures available and at what ages they could be performed. I read medical journals and poured over research studies. Admittedly, I was completely obsessed over all of the details involved with them, that it took my focus away from raising my little boy.

Then, our son started having more procedures to his palate and eyes after an infant jaw distraction. After seeing my baby in pain, seeing him struggle to come out of anesthesia, learning more about the complications involved with being put under anesthesia, and watching what other people went through with their children during surgeries, I decided to take a step back from obsessing over the details.

My perspective changed, not from what anyone said to me specifically, not from someone’s thoughts on the best surgical method, but by holding my child’s hand and watching him overcome that pain, coming out of that rough time stronger and more equipped to conquer the world.

After six-and-a-half years, seven surgeries, hundreds of appointments filled with numerous procedures and expert opinions later, I realize I have a child with his own perspective, opinions I did not think about when he was an infant. He is helping our whole family to grow and once again widen our tunnel-vision a little more to include his input and thoughts, which, at times, are starkly different than ours. Hearing his thoughts helps me to understand and appreciate others when they share an opinion that may differ from mine. Hearing him speak so confidently about his own body and his struggles with surgery, made us stop in our tracks and realize that this is his journey, and we are just the drivers. That is the beauty of the scope of perspective, and how each new piece of information, feeling, and experience helps to mold us and deal better with the challenges that we know will certainly come our way.

Unfortunately, perspective can be a double-edged sword. With all of the message boards available on Facebook and social media, diverse opinions are available to support or shut down absolutely every current practice or belief in the craniofacial world and any other conditions that so many people are dealing with. I have always appreciated those open forums through these boards, but they certainly can become overwhelming, especially when members start to argue over a point that can throw a new parent into a tailspin, not knowing which end is up. While we with young children all truly appreciate the support from those who have trudged ahead of us, there can sometimes be this attitude of “you haven’t seen nothin’ yet,” or “at least your kid hasn’t had to…” And the hardest to hear, in my opinion, “It’s not in your child’s best interest to…”

I must admit, that I’m guilty of this, on many counts, at least in my mind. I remember having come home from the hospital with my son after his cleft palate repair. He was eight months old and came home with an NG tube up his nose for feedings and hundreds of stitches in his mouth. He couldn’t sleep well, he couldn’t breath easily, and he bled for days. I would have to hold down his little arms while he screamed at the top of his lungs as we had to keep putting the NG tube back up his nose that he had pulled out for the ninetieth time that day. Needless to say, it was an overwhelming time in our house.

At the same time, I specifically remember a friend posting on Facebook that her son cried in the doctor’s office when he got his two immunizations, and that she did too, knowing the shots had hurt. Her heart was completely broken. I imagine now, if you walked in the room at the moment I was reading that post, you would have seen fire coming out of my ears. It made me angry and bitter that her biggest problem at the time was “merely a shot.” It took every part of me not to type a nasty comment back telling her how much worse it could be and that she should just suck it up. But, I came down from my anger, and I thought to myself that our perspectives are so different. That experience for her was awful, just as my current one was. She didn’t need me to tell her how much worse it could be; she just wanted us to listen and relate.

And I also know that many of you who read about our palate repair at that time, would have thought the same thing about me — that this too shall pass, and it will all work itself out in the end. That’s perspective helping us to change and grow, and there are some times when we just want to be heard for the sake of being heard, and we want someone else to say “Yes, this is hard. Yes, this is a very difficult decision. No, there is no correct and perfect way.” And what a blessing it is when that happens! In those times when we don’t have much perspective and our tunnel vision is in full effect, a healthy support system like the Children’s Craniofacial Association (CCA) is paramount for helping us to grow, change, and learn from the oh-so-stressful experiences that we are having either ourselves or with our children.

At an early stage in our son’s life, I wove myself into an incredible support system of moms in the same place as me and a few steps ahead in their craniofacial journey. I became an active member of CCA and I saw how others handle their pain. I learned that life can be a complete and utter joy, all without being explicitly told what to do by any of them. I watched, I read, I cried for them, I prayed for them. As a family we continually discuss what these other people are dealing with together, and how we will feel when we are in that same boat. I have been held up by these mothers and CCA members, and was allowed to let my perspective evolve and change, and I am so appreciative of all of it.

I don’t know where my family would be without these amazing people in our lives, and how differently we would look at living a life with a medically complicated path. I do know for a fact that we would feel alone, confused, and probably overwhelmed. I also know that our son is young, and we still don’t have the “best view.” We have more hurdles to get over, more of the mountain to climb, and more bumps in the road ahead of us. But now, our ever-changing perspective allows us to know that when we are in the thick of whatever is plaguing us at the time, we can find someone, somewhere in this group to help us take a step back and gain the perspective we need to trudge through, and eventually, we can become someone that new scared parent looks to when they are in need for a fresh and necessary, broadened view.

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Originally published: October 24, 2016
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